Little changes, big difference: making lupus better!

Over the summer, I decided to make three itty bitty changes to my daily routine, in an attempt to make the Lupus part of my life run a little more smoothly. I was surprised at what a positive impact they had, and how much they improved my outlook on lupus life. Thus, I've kept up the changes through the fall.

Here are the three things I did:

1) Asked my babysitters to come 30 minutes earlier.

To accommodate my daily nap while my girls are out of school in the summer, we hire babysitters to come several afternoons a week. And for as long as I've hired summer sitters, I've always asked them to arrive at 2pm, to cover my nap starting at 2pm. That's just been the drill.

But this past summer, I moved up their start time to 1:30pm. I always felt tired between 1:30-2pm, in anticipation of my 2pm nap. Why not try avoiding that 30 minutes of fatigue by asking the sitters to come earlier, thus enabling me to start my nap earlier?

I never knew what a difference a half an hour could make!

Gone was the crankiness that habitually took place between 1:30-2pm, as I anxiously, though impatiently, waited for 2pm to arrive.

Gone were the struggles with the girls, incited by fatigue.

Gone were the constant yawns and scratchy eyes.

Gone were the days where a 2pm nap turned into 2:30pm, or even worse 3pm.

With this little change, I successfully eliminated a window of time that I never knew I dreaded so much. No longer did I  experience that mental exhaustion and physical discomfort that always takes place when I wait too long to take a nap. I avoided personal feelings of guilt,  embarrassment, resentmnent, and regret, simply because I didn't give myself the opportunity to slip into those fatigued-induced emotions.

2) I switched the time of day I took my iron pill.

One recurring symptom I have with lupus is anemia. Year-round, I'm either anemic, borderline anemic, taking a 24 hour urine to see if I am anemic, or coming off iron because I'm no longer anemic.

So when I started an iron pill earlier this year, it was nothing new. What was shocking was the way this particular pill upset my stomach. (I've been on iron before, but this one was different.) I quickly realized it HAD to be taken with food,  which eliminated my morning and evening doses, since Cellcept requires an empty stomach. So I started taking it at lunch time, which made me a 3 x day pill popper.

And boy, was that a pain.

I've had to take pills 3 (and even 4) times a day before, but I don't like it. It's disruptive, it's one more thing to remember, and I don't like having to coordinate my lunchtime meal with a pill.

But I did it. And hated it. I started resenting the fact that I was anemic, which means I started blaming lupus, and eventually blaming my body, and that's a very slippery slope.

So I made a small change, before my attitude toward lupus took a major turn. I  decided to try taking my iron pill in the morning - with the Cellcept, and everything else I take. I figured I only had to wait an hour before eating, and I was hopeful that the nausea from the pill wouldn't have time to set in (unlike the time I took it at night, and got sick the next morning.)

It worked! I felt zero nausea, it didn't conflict with any of my other morning pills, and I no longer had to fit in that orphan pill at noon time. Instant relief, and immediate morale booster. Just in time.

(And for all of you who have requested a 3 x day Pillfold - I felt your pain, and I'm working on it!)

3) During every nap, turn on a fan, no matter where I am, no matter what the fan.

This move has truly changed my life. I've always known the value of white noise, but I was always reluctant, and somehow embarrassed, to run a fan during my nap, particularly when I was traveling.

But all that changed with a trip to my in-laws' shore house this summer. They suggested I turn up the window air conditioner in my room during my nap, and immediately, my naps improved in quality. The noise truly blocked out all other disruptions, and I slept like a baby.

Thus, I've carried over the habit, at home, in hotels, and even when I'm a guest at other people's houses (although I try nit to over step my bounds as a grateful guest!) If there's a bathroom fan, I turn it on. It there's a Fan function on the air conditioner, I opt for that. I do whatever I can do to block out the noise, in order to get the most productive nap I can.

It has made a HUGE difference, and it even makes for a more pleasant environment for my family while I'm napping. The fan allows them a lot more leeway when it comes to being quiet during my nap. I'm still extremely thankful when people are considerate of my sleep, but the white noise does take the pressure off.

So there you go. As insignificant as they may seem, these little changes clearly made my life with lupus easier. And that's the goal. If life with lupus is going to work, we have to be strategic how to make lupus interfere the least, while benefitting us, the patient, the most!


Anonymous said…
Re using white noise while you nap:

If you're ever stuck in a situation where there is no fan to use for white noise, or if you just want to try something different someday, there is a nice iphone app called "Relax Melodies" (maybe there is something similar for other types of phones) that can be used to play various kinds of white noise through a phone or tablet. You can keep it simple and choose one sound, or even layer a combination of multiple sounds.

Also, my boyfriend has what he calls a "sleep machine" that plays white noise. I think his was around $50, and it looks very similar to the "Marpac Dohm Original Sleep Conditioner" shown on the bed bath and beyond website (don't bother with the really cheap ones - I tried one of those myself and it was so awful I ended up returning it). Anyway, he keeps his "sleep machine" on his bedside table at home, and even packs it when he travels. But if he forgets it, or doesn't feel like bringing it, he uses the phone app instead.

On a semi-related note, I occasionally babysit for a family friend, and she keeps an old iphone (an old model that they didn't bother trading in when upgrading to a new phone) with a white noise app in her youngest child's room. She has me turn on white noise when I put the kid to bed at night. They keep the phone across the room over on the changing table/dresser, not right in or near the crib/bed, and they play the white noise at a fairly low volume. They've had success using either the "vacuum" sound or the "hair dryer" sound, which I find hilarious; but hey, whatever works!
Sara Gorman said…
I think I'd like the vacuum sound, too!! Thanks so much for these great tips. I HAVE used an app on my phone, but it zapped my battery a bit.. :) but in a pinch, it will work well! Thanks so much for commenting!
Unknown said…
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Unknown said…
You're definitely not alone. I have to use a fan during naps and bedtime. My poor hubby in winter is chilly but he understands and adjusts cuz he can sleep thru anything. I have a white noise app that was free on my cell, lol that the fan noise on there is my fave but the rain works too. Happy sleeping!
Unknown said…
Think they have a waterfall sound too but if you take lasix (no matter how early I've taken it) you'll be up allot to the bathroom. Lol
Sara Gorman said…
Kristy - Oh. That is so funny. :)

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